Private Clinicians’ Network for ME & LC

“Panic” is the word I would use to describe the realisation of Long Covid in the Australian healthcare space.

Everywhere, humans are pleading for help in despair.

Patients cannot find a doctor who could help them. They need help.

The majority of doctors don’t know what to do with Long Covid (LC). Nevertheless, they face an increasing number of frustrated and desperate patients. They need support instead authorities wrongly blaming them.

For a handful of Myalgic Encephalomyelitis (ME) knowledgeable doctors, Long Covid is nothing new. However, they are facing an influx of demand from desperate Long Covid patients that is beyond control. Even before the pandemic, the demand from ME patients pushed their workload over capacity.

About half of patients with Long Covid (pwLC) are said to have ME. It is a no brainer that they also queue up to see the handful of ME knowledgeable doctors for desperate help.

The ME knowledgeable doctors are seriously facing burnout. I am too horrified to visualise what this will do to pwME and the Australian healthcare system. It will make thousands of patients suddenly left without ongoing medical care.

These doctors need help NOW. They cannot wait for another 5 years for the government to put some system in place.

The Australian healthcare system is very complex. There have been discussions about healthcare reform and what would be the best healthcare system. While there have been uplifting and innovative ideas and suggestions, defining what is the best healthcare system itself has divided opinions. Some want to see data for better planning, while some advocate for action first.

Bring the focus back to ME and LC, the tragedy in this status quo is that humans are suffering. Saying “this could have been avoided” wouldn’t give any comfort to suffering at the crisis level. The paralysed mind cannot take action and repeat excuses that there is not enough data… It seems nobody wants to lead to move forward from the status quo.

The government seems to accept that Long Covid is a serious long-term problem. However, I’m afraid they still think (hope) it will go away if they don’t take it seriously. They are still not listening to clinicians who actually provide care for pwME and pwLC and patients who have decades of lived experience with this disease.

Let’s do something, now!

I have been in touch with an ME knowledgeable doctor to improve clinical care for ME. We are acutely aware that we must include Long Covid in our vision for the speciality clinic.

He has been quietly networking with like-minded clinicians to support the vision of the specialty clinic that ME Group Australia has been planning. “The true power of MDT” with telehealth clinics to provide care for the group of ME and LC is doable. And it is necessary now.

I also know that at least 150 doctors, nurses, and health professionals in Qld are very keen to learn about ME and LC.

What I suggest here is a bandaid solution for ME and LC. Although I don’t like the bandaid solution, it will give us the opportunity to begin a journey to better clinical care for both pwME and pwLC.

The first stage of the opportunity would be the pilot Telehealth Clinic.

Private Clinicians Network

If you are a clinician, please join our LinkedIn group, MEGA (ME Group Australia) Clinic Clinicians Group. It is an unlisted closed group. Please click the link to find us. If you have trouble requesting to join the group, please connect with me on LinkedIn. Then, I will invite you to the group.

We are quietly campaigning for Qld Statewide Clinical Network for ME. According to Healthcare Improvement Unit (HIU) at Clinical Excellence Queensland, the project is at low priority due to a lack of clinicians’ voices and lack of funding.

The purposes of our private clinicians’ network are;

  • Peer to Peer knowledge exchange on ME, ME/CFS, Long Covid, Post Viral illnesses, Neuroimmune Diseases, and related diseases and conditions.
  • A place to discuss and learn the needs for clinicians to care for pwME and pwLC.
  • A place to unite clinicians who care for pwME and pwLC.
  • A place to discuss and learn how the telehealth clinic could be established and operated.
  • VOICE! Doctors who care for pwME have been unfairly scrutinised regardless of how they care for patients with evidence and with professional due diligence. They need solidarity from their fellow professionals.

Pilot Telehealth Clinic for ME and LC

I would like to hear from clinicians in the private clinicians’ network about strategy and planning for the pilot MEGA Telehealth Clinic.

The purposes of the pilot telehealth clinic are;

  • Share the burden on a small number of ME knowledgeable doctors from the influx of patient numbers.
  • Collect clinical data to bring it to policymakers and the governments for their support, strategy, and funding.
  • With trial and error, we collaboratively create sustainable clinical care for neglected health/medical conditions.

Considering the degree of the problem, the pilot telehealth clinic is only a small action we must take to move forward.

The impact at the start may be negligible. However, I still want to believe that doing something small today will be much better than doing nothing at all. The difference in 10 years could be phenomenal!

I look forward to hearing your thoughts and suggestions. If I could collaborate on this movement with you, I would be very grateful.

Thank you for listening.

Disclaimer: I am a health consumer, not a clinician, who lived with Severe ME for about 20 years.

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